OPTN/UNOS policy proposal for public comment

UNOS/OPTN distributed electronically, September 16, 2011.

[ The proposed policies from the Living Donor Committee, and likely to be of more interest to living kidney donors: #8, #9, #10, #31, #42, #43 & #50. ]

This document contains fourteen policy proposals being offered for public comment. These proposals were developed by OPTN/UNOS committees. When the public comment period ends on December 23, 2011, each sponsoring committee will review the feedback they receive and consider modifications to the original proposals. The OPTN/UNOS Board of Directors may then review and vote on these proposals at its meeting on Juney 25-26, 2012.

We welcome your feedback on this policy proposal and other aspects of the public comment process as we continue to improve the way that we communicate with the community. Please note that all exhibits and appendices to these proposals can be found on the OPTN website via the link below. Please click on this link to provide your comments on these proposals.

You may also send general feedback to: publiccomment@unos.org.

Please submit all comments no later than December 23, 2011. For questions about the proposal, please contact your Regional Administrator at (804) 782-4800.

Thank you in advance for your careful review and feed back on this proposal.

For information on OPTN: 

 Organ Procurement and Transplantation Network

For information on UNOS: 

United Network for Organ Sharing

one year. one kidney

Happy Anniversary, to me. A Starbucks skinny vanilla latte is helping me celebrate. Yum.

One year ago today, September 22, 2010, I donated my kidney to an unknown recipient.  I remember waking up from the anesthesia and whispering to my mother, "I'm so happy I did this." And I still am.

I would do it again tomorrow, but I can't. I recall going into surgery early that morning feeling remarkably calm as I laid down on the operating table. My last thought before being put under was how unfortunate it was that I was going to miss the moment that I had been anticipating for 6 months. Bam! It's over, and I have nothing to show for it, but my scar. It's a constant reminder, and a good one.  I think doc did a damn fine job.

September 20, 2010

October 31, 2010

September 22, 2011

My left kidney is now in the body of a beautiful 29-year old woman in Bakersfield, CA. And I wish I was there with it. Hello, sunshine!! Last I heard, she is doing fantastic. Her doctor has given her the go-ahead to have another baby, and she is thrilled to be working once again, going to school, and enjoying the wonderful life that for so long she had been stripped of.  I don't have much contact with her, but a warm text message pops up once every few months with an update on her health. You can't imagine how relieved I am when I hear of this good news. I still think about her every day.

I often get questioned about my health since that big day. (Physical, not mental, cuz they all know I'm a freak.) Friends still ask me how I'm feeling, and what changes I may have noticed since the donation. Honestly, I feel great. No pain, anywhere. As you can see from the crappy iPhone pics, my incision scar has healed beautifully and I am still shocked that they pulled anything larger than an M&M out of that. And there would be gobs of them... peanut, coconut, peanut butter...

There is one side effect from my surgery that has not diminished. Fatigue. Boo hoo. It's bad and it's not getting better. I hate to admit it, because outside of this one issue, I'm exactly the same person I was on September 21, 2010. The fatigue was expected early on in my recovery, and I was aware that I would have to work through it over time. Well, it's been a year now, and it's not any better than it was the day after my surgery. 

I am a very busy chick, and I do push myself, but I know my body and I know that I feel different now. I believe that fatigue is manageable. It's not pain, it's an inconvenience. I work through it, but it's hard as hell. Some days I feel like I could fall asleep standing up. Even when I'm in the middle of the most exciting and stimulating adventure with friends, I feel tired. All. The. Time. It never goes away and I am having a hard time tolerating it. But, I will. I do.

There are donors that have experienced this long-term fatigue, as I have been doing some research online to find suggestions as to how they cope with it. I know there are prospective donors that read my blog, and I mention all this because I think it's important to be honest in sharing my experience. I do want to be clear though that not all donors suffer from this particular side effect. I want to reiterate that every single donor has a unique experience - before, during and after surgery. Some donors have suggested that maybe I am still not healed and that the fatigue will slowly go away. That would be great and I am anxiously awaiting that possibility. 

The goal with my blog was to inspire and motivate just one individual to donate their kidney. That hasn't happened yet. However, I have met some amazing donors that I have had the pleasure of mentoring over this past year, and that's a huge achievement in my heart. I hope that I can continue to educate, inspire and be a friend to those that are beginning their donation journey. I know I had a wonderful mentor when I began mine and I want to continue to help others in the same way that Cara helped me.

I am so fortunate to have the ability to do what I did. I enjoyed the process, the research, the knowledge I  gained, and more than anything, I have enjoyed knowing that I have given new life to a woman, her husband, and her daughter.

For those interested in learning more about becoming a living kidney donor, please visit the following organizations online to get more information. Take the opportunity to have the most meaningful experience of your life - donate your kidney.

• National Kidney Registry
• Living Kidney Donors Network
• National Kidney Foundation
• United Network for Organ Sharing

Until next time... It's getting cold in NY, I've released the wool and down comforter - hibernation has begun. Not happy.

UNOS region 9 meeting

Living kidney donors, listen up!

UNOS (United Network for Organ Sharing) is holding a conference at which they will be forming transplantation and donation policies that could affect current and future donors - and they are doing so without the representation of the donor community.

We need your voice! Please help protect our rights by attending their Region 9 conference with us.

Wednesday, October 12th, 2011

10am-3pm

Albany Marriot

189 Wolf Road, Albany, NY

If you are interested in joining forces with other living kidney donors who want to be heard, please send us an email: lkdalliance@gmail.com

I encourage you to get involved in UNOS through attending this upcoming regional meeting and participating in the policy making process.

Would love to have this opportunity to meet other living donors, and share our experiences!

See you there!

please participate in a donor survey

I'm reposting this one more time, kids...

This post is for all my fellow kidney donors, both directed and non-directed.

I am working with a group of donors and we have created another survey that we are asking you to participate in. If you missed the opportunity to take our first survey, you can go here, to complete that one as well.

The purpose of this particular survey is to find out what improvements could be made in the living donor community, specifically with the pre and post-op care from your center in which you donated. Your answers will be treated in confidence and will help to plan discussions with transplant programs, legistlators, HRSA and insurance carriers.

Please take a moment to forward this email to any living kidney donor that you might know. This survey can be directed to both altruistic donors, and designated donors. Our goal is to collect 300 completed surveys. We encourage you to share this link on your blogs, social media sites, or emails.

We thank you for your time and consideration and we look forward to hearing from you! If anyone has questions or comments, please contact me directly by emailing me at: ars0168@yahoo.com

Please click on the following link to direct you to the survey:   https://www.surveymonkey.com/s/9WVJLSY

Summer will be gone soon (boo-freaking-hoo), so soak up the sun and enjoy the final month of my favorite season!

Smiles...

Angela

inspiration - pt. I

The Yankees are on and it's actually being broadcast on a station that I get with my 'Poor Girl's Cable Package'. Options also include: Public Access, HSN, C-SPAN and TV Guide Channel. Hell of a selection, isn't it?  Anyhow, I'm a little distracted because I have to look up at my 10" TV every time my boyfriend's at bat. I couldn't wait until tomorrow night to share my news, so as scattered as this post may be, here goes...

I pulled the trigger. Not on a gun because I don't like guns.  I guess what I mean is that in a moment of confusion, anxiety and immense motivation to reach a goal I had set to achieve this year, I registered today for the L.A. Rock 'n' Roll Half Marathon, on October 30, 2011.

This is a big, f*ckin' deal, folks! Why? Because I can't run. I shuffle, I skip, I scoot, and when I'm frustrated, I stomp. Not to mention that I'm out $100 if I break a leg, or need a kidney, or have PMS.

[They're winning. Top of the 7th, 3-0. Don't ask who they're playing because it doesn't really matter.]

As disappointed as I have been with my running performance lately, I was determined to push forward. The frustrations started to increase about 2 months ago, after I completed my first 10K race. I did great at that race, but ever since then, I seemed to be getting slower, and sloooower. I struggled with as little as a 3-mile run and couldn't seem to get anything to feel right. My energy was down, my body felt  heavy and tight, and I my breathing became increasingly difficult. My peers in the running community continued to make progress, increasing their distance, and here I was moving backwards. Everything I was doing, I was doing wrong. Depressing. I began to read more in search of tips and suggestions or even answers that could serve as a diagnosis of sorts to make me feel better about my crappy performance. I got nothing.

[Rain delay, bottom of the 7th.]

I decided to reach out and touch someone for help, because I was a little pissed, to be honest. I follow a local blog here, called How 2 Run Fast and emailed the blogger, Mike. I asked if he might know of a local running coach and he was kind enough to put a post about my inquiry on another local blog he writes for, The Times Union Runners Blog. Readers provided some suggestions and comments, but the best reply came from a woman that would be my inspiration to kick this struggle into full gear and move forward. Her name is Mary Ibbetson.

[Top of the 8th, Yankees still winning. Rain still falling.]

Mary reached out and offered to help me. Poor woman. After a few email exchanges, we chatted on the phone and by the end of the conversation, I already started feeling motivated to make some changes. What an amazing woman! (Please take a moment and get to know Mary.) With her inspiration, coaching and torture, I know that I can reach my goal now. As she says, the work is 90% mental. Why then does it feel like it's 90% hell? With the help of her presence in my life, for however long or short it may be, I made a decision to register for my first half marathon. Thank you, Mary.

[Now it's really pouring, still 3-0 and the fans are slowly trickling out.]

I have done a heck of a lot of pokin' around the internet to find the perfect race for my first half marathon. I have reviewed countless options - everything from locations, to themes, to fundraising partners, dates and registration rules. I was shocked as to how many are out there, but also excited that I would even have that many options.

[Home run, Mark Teixeira! Now the Yankees lead 4-1, bottom of the 8th.]

It's strongly suggested that when you create a running goal such as the one I have, you need to make the commitment and register for that big race, whether it's your first 5K, or your 6th marathon. I needed to do that, and I needed to do it now. It will hold me accountable and I'm the type that once I set my mind to something, I will do everything in my power to follow-thru because the one person I never want to disappoint, is me.

[Game over and the Yankees win!]

I have 13 weeks to train for this. For some reason, the training program I have to follow does not include:  Sal's mojitos at Hattie's, the yummy Death by Chocolate ice cream from Stewart's, Jimbos at Bomber's, Chocolate Peanut Butter Pie at The Lighthouse, and my Friday night bag 'o pork rinds in bed. It should. Guess I'll need to make some minor modifications.

My brother and I enjoying what I now know was my last mojito for the summer. Boo hoo.

So, I've started my training, I'm excited and proud of my decision to register.  More importantly, I know I can do this.

Oh, and there's one more reason why I selected this half marathon in Los Angeles...



Until next time... I'm counting the days until the Runyon 5K at Yankee Stadium!